thyroid misery

ugsparky

Ok - I have no idea who you are but please just read these words and consider your situation. Firstly my wife is going through this also so I know something of what you are going through. She too felt at one stage that no one was listening or cared or even gave a f*** (her words) - that the doctor/his team/hospital people where just going through motions. So we started again.

I strongly advise you to go to your GP and ask him/her to refer you to a specialist - a private specialist who will discuss your symptoms and treat you as an individual on an indvidual basis. My wife attends the private Beaumont Clinic under Prof. Chris Thompson - he did more for her in 6 months than the staff in the hospital did in 2 and a half years - there is light at the end of the tunnel - he has been very informative and has a definitive course of action. We are very hopeful that by January my wife will have recovered fully. So you see you should not give up. There are always alternatives. I know private consultation cost's money but unfortunately it appears to me that this is the only efective way to treat this. Expertise requires an expert. I wish you well and hope you find answers and cure.

RubyGirl

RubyGirl wrote: »

Having the same problem and I'm on yasmin aswell. I take both pill's in the evening. Hoping to get an appointment with the doctor in the morning so I'll ask. Bet she'll say to take one in the morning and the other in the evening?

Doctor said taking both together should'nt be a problem. If I have the same problem next month she will put me on a stronger pill.

TheJinMu

Hi, I havent visited here in quite a while. I'm on 50mg a day and just recently started the mini pill I think it is? Its called Cerazette... But anyway, I take both at the same time every morning (times vary but always between 10.30am and 11.30am) I never heard up til now that they may affect (effect?) each other. Is there any sort of proof in this? I'd be interested in knowing! I've been on iron tablets for the last 2 or 3 months too as my Thyroid levels are nice and even but still feeling tired. These have helped a bit but I'm still tired a lot. I've been getting more headaches recently too.

I think a lot of it may be down to my lack of exercise, I need to get motivated and start going for walks or something. I think this may be one factor in a lot of symptoms with people here. I realise how hard it is to go walking when you feel like s***, but exercise helps a lot of things and the fresh air could really help too. Personally I think this could really help.

I also think that reading symptoms on these lists online is slightly counter-productive. I think once you've read something it can sometimes make you think you'll have all these symptoms too and therefore cause them. This is just my opinion now, nothing against people doing this-I read a lot myself too when I was told I have hypo-thyroidism, but I've since stopped :P I think too, that when we dwell on these feelings-the tiredness etc, we make ourselves worse. (Also guilty of this myself.) :P

I'm just trying to give my two cents and trying to explain that I think some here need to take a step back and look at things. (I realise this may not be the way this is coming across, I dont have a way with words) :P

Best of luck to everyone too! I do hope noone takes this up the wrong way and I havent offended anyway - I'm in the same boat too, just trying to give a different perspective.
(And now I'm babbling.)

(EDIT: Post above me, did you mean taking both together SHOULDN'T be a problem?)

happydays5

Hi all - great thread .... i was diagnosed with underactive thyroid 5/6 years ago and was put on eltroxin varying between 100mg and 200mg after various blood tests. my problem is my ferritin levels are at 6 and have been like that for past 3 years - my hgb is always around 10 or 11 - i am completely exhausted - now my ankles have started to swell and i feel a little breathless for simple things .... has anyone else had any of these symptoms? is it an endocrinologist i need to see? i would love some reccomendations for one and i have private insurance so if anyone could pm me it would be great! my gp is very laid back about this but im really suffering and have 3 young children .....

cltt97

I've had some episodes with swollen feet, very uncomfortable. For me, this is definitely thyroid related and has to do with kidney function (impaired due to lack of thyroid hormone). Seems like most thyroid sufferers have low ferritin etc. Have you ever had a full blood count done? Are you taking any supplements?

sam34

happydays5 wrote: »

now my ankles have started to swell and i feel a little breathless for simple things..

hi there

please don't assume these new symptoms are due to the thyroid. there are a number of possible causes so you need to get checked out. if you feel your gp isn't taking you seriously, find another gp.

robinph

Does anyone have any experience with having changed your levels of activity and that then having a bearing on the dosage of thyroxine needed?

El.duderino

robinph wrote: »

Does anyone have any experience with having changed your levels of activity and that then having a bearing on the dosage of thyroxine needed?

I have experienced this a few times. I have told various Endo consultants I,ve seen and never got the answer I wanted! Going back nearly 10 years ago I first joined a gym. I started to notice the more I trained the more my dose increased, as I went further underactive. Max around 200. I,ve noticed it again this year after a period of intensive training. I,m always under now on my bloods. Fingers crossed I have very little symptoms anymore. But i,m always borderline hypo or in need of increasing my dose. I prefer to be here than overactive and feeling like i,m going to explode.

But definitely intensive exercise does effect your metabolism and your bodys need for thyroxine. When I talk about exercise I mean many hours of anaerobic/threshold training a month. Not walking around a park.

El.duderino

Forgot to add*

While I had a knee injury some years ago I went hyper. Training stopped while on a higher than present dose. Dose was reduced at following test. This supports my theory I hope.


Is anyone else here attending St James? They are trying to stop people attending the Clinic. My appointments are usually 6-12 months apart. The next appointment is a phonecall from the clinic! Waiting to get my phonecall this friday. Just go for bloods then you get a call to tell you results. I,ll report how it works out. At least you dont have to Q. Whether anyone ever rings me is another thing! :pac:

robinph

El.duderino wrote: »

I have experienced this a few times. I have told various Endo consultants I,ve seen and never got the answer I wanted! Going back nearly 10 years ago I first joined a gym. I started to notice the more I trained the more my dose increased, as I went further underactive. Max around 200. I,ve noticed it again this year after a period of intensive training. I,m always under now on my bloods. Fingers crossed I have very little symptoms anymore. But i,m always borderline hypo or in need of increasing my dose. I prefer to be here than overactive and feeling like i,m going to explode.

But definitely intensive exercise does effect your metabolism and your bodys need for thyroxine. When I talk about exercise I mean many hours of anaerobic/threshold training a month. Not walking around a park.

That's great info, thanks.

I've been upping the mileage I'm running at the moment in the last couple of weeks since I've been able to have time to run more often again, and there is Dublin marathon coming up at the end of next month. The change in training has effected my insulin dosage, but I understand what is going on there and it's easy to get an instant blood test result to show me what is going on. Whilst the thyroid seems to be just based on what it feels like, except the GP is convinced it's all OK as the blood tests are within their expected range.

Should hopefully get a call back from the hospital tomorrow and have a chat with them, but your response at least helps me convince myself that I'm not going completely mad with my theory about the training levels messing things around.

Orla K

El.duderino wrote: »

But definitely intensive exercise does effect your metabolism and your bodys need for thyroxine. When I talk about exercise I mean many hours of anaerobic/threshold training a month. Not walking around a park.

What would your training involve?

There might be lots of reasons you would need more thyroxine, I'm not an expert so I don't know but one reason could be your adrenals are getting stressed and this has an affect on the thyroid hormones.


I've a question for everyone here. What do you think of treatment your getting for thyroid conditions?

El.duderino

I cycle uphill mostly. I only said anaerobic to guage what I meant by intensive exercise. Exercise has a broad meaning.

This study supports higher instance of thyroxine in strenuous activity. It directly increases in proportion to intensity.

http://www.nel.edu/26-2005_6_pdf/NEL260605A14_Ciloglu.pdf

robinph

Spoke with the doc at the hospital yesterday and I'm not sure they were convinced about the theory of increased activity levels effecting the required thyroxine dose needed. They did send me to get another TSH and T4 bloods done so have to see what they say in a couple of days. They also asked for kidney function and "CK" as well, can't quite remember her reasoning for wanting those tests as well, or what the "CK" is, seemed to make sense to the nurse taking the bloods though.

cltt97

CK - Creatine Kinase

TheJinMu

If the idea that "increased activity levels effecting the required thyroxine dose needed" came from me, that wasnt my point, I dont think it would affect the dose needed at all, but I think it would help in the lingering tiredness that a lot of us still feel.

Wyldwood

TheJinMu I have to agree with you, I don't believe dosage needs a lot of adjusting with exercise. I have noticed that if I push myself to get out for a good long walk on the days when I feel like crawling back into bed because of low energy I feel so much better afterwards. I think it just increases my sluggish metabolism to a point where I can keep going. Exercise is very important for hypo people.

robinph

Nope, I think I had the idea independently. Unless you got me by some subliminal messaging method.

Trying to figure out why I've been back to feeling crappy the last couple of weeks and the main change is the level of training I've been doing. I've been doing a fair bit of Googleing though and there is not much out there to support the idea, but a few endurance sports related message boards do have the occasional person who had to up their dose based on training levels. Nothing really conclusive though so more investigation needed yet.



I did discover that Galen Rupp is hypothyroid on my travels around the internet. He got 2nd place in the London Olympic 10km to his training partner Mo Farah. Here's me and Mo when I was in the "elite" start for a 10km race earlier this year.

Sunny78

LimerickBishop wrote: »

Yes, excellent post there cltt97. So, if anyone new arrives to this blog and wants to inform themselves about the thyroid function, could you please read the entries on the blogs first, and then ask your questions, as many of the answers you may be looking for are already there.

I've just noticed in the last few days I'm getting a twitching sensation on my forehead, usually lasts for about 20 seconds, then goes, and I get it maybe 5 times a day. Its unnerving when it happens. I googled it, seems like there's a link between this and drinking coffee. Now, I usually enjoy only one cup of coffee a day, and its always decaf, so I'm a little bit perplexed, is this another little everyday common treat I'm gonna have to give up? I'll be living like a mormon in no time. Anyone else have this before?

Also, had a little setback with swimming, got an ear infection, which results from swimming a lot and air travel (which I've done a lot lately and noticed my ears aching a lot when descending to land). Now my weight is starting to go higher again. I can't really do much land exercise as I went over on my ankle 3 weeks ago, so I have to be careful with that.

Thanks for all the useful info cltt97.

I have been diagnosed with hashimoto disease about 8 years ago. At first the medicine help me a bit, but I feel like the symptoms are never really gone. Now I im on 50 gm Eltroxin. Although I have been suffering with tiredness, my nails break all the time, fine hair, depression, I go to the doctor , do my exams and all seems fine, hormones are in a ok level, and all the gp says if I relate my symptoms is advising me to take an antidepressant. They dont want to increase the dosage as the blood test seems fine. And to be honest Im not sure if that in itself would help, as from what I have read. My family doesn't really know much about the subject and sometimes they say I complain a lot, but I think is all related to the hormone imbalance that I suffer, but people seem not being able to realize that, of course is not their fault. What really upsets me is that some people think I'm slow, they tell me im so caaaalm, or tell me to wake up, like Im some kind of stupid, they start treating me like a stupid and I start really feeling stupid, not being able to concentrate, Im easy distracted and my memory doesn't work so well. recently I started a new job and a Master degree and Im all worried if Im going to be able to manage all that. My plan is to start a new diet, based in advice I got from here, and start exercising. Im hoping this can help me. Do you know how long does it take until I can feel a little better? Also, Im living in Dublin, would you have a good endocrinologist to recommend me?

Thank you so much. S

Galbin

Sunny

I have a great endo who doses by the free T4 and Free T3 levels and not by the TSH. He has also done a lot of research on the matter.

Pm me if you want his details.

dubbo

Just came on here to have a bit of a moan really!I have been feeling so well for ages,starting to think that the meds were working and I was basically 100% again. I had a busy weekend last weekend,involving far too little sleep,and I still feel absolutely awful even 4 days later! It's very frustrating hope everyone is well

cltt97

Hi Dubbo,

yep, I know the feeling. unfortunately since our bodies are not able to auto-regulate our hormone needs, and our hormone supply is based on our "average behaviour", if you do something "out of the ordinary" you will feel it... I sometimes just add a bit more to my mix, but of course everyone is different and not everyone will be able to do this, and of course this should be discussed with your doctor...

dubbo

cltt97 wrote: »

Hi Dubbo,

yep, I know the feeling. unfortunately since our bodies are not able to auto-regulate our hormone needs, and our hormone supply is based on our "average behaviour", if you do something "out of the ordinary" you will feel it... I sometimes just add a bit more to my mix, but of course everyone is different and not everyone will be able to do this, and of course this should be discussed with your doctor...

Thanks for the reply,much appreciated :)its just frustrating,and unfortunately people don't seem to understand when I'm feeling off (work,friends etc),so I think I need to do a bit less maybe

Amazingfun

Hi, I am new to this thread as I just got my blood test results back and have been told that after they confirm the results (just to double check) I will be starting on the hormone replacement drug next week.

My 'numbers' on this test were:
Thyroid function test: 4.2
T4 Free: 10.4
Serum Ferritin 29.47

....(and I am a bit clueless really, just posting for interests sake) and I have to phone in on Wednesday to confirm the diagnoses and start treatment.

Galbin

Jake1 wrote: »

I have to have tests done for Hypo Thyroidism.

My main problem with it, is Constant hunger. any one else suffer from this constant hunger.

I find i have to supplement what i eat with a drink called ensure .
Was out for dinner on sat, and I ate soup, large steak, with veg and a plate of pasta, three slices of pizza, and two slices of crostini. Soon as I left the restaurant I was starving again. Weird thing is, the more I eat, it seems the hungrier i get.

its horrible. Im hoping if they put me on medication the hunger will stop.
Has anyone else had this constant hunger form Hyper thyroidism?

Are you under or over active? That constant hunger things sound very HYPER.

If you are actually dx as hypo and not hyper; I myself would get a test for insulin resistance. I was starving all the time and was eventually dx with severe insulin resistance.

Galbin

Amazingfun wrote: »

Hi, I am new to this thread as I just got my blood test results back and have been told that after they confirm the results (just to double check) I will be starting on the hormone replacement drug next week.

My 'numbers' on this test were:
Thyroid function test: 4.2
T4 Free: 10.4
Serum Ferritin 29.47

....(and I am a bit clueless really, just posting for interests sake) and I have to phone in on Wednesday to confirm the diagnoses and start treatment.

Most people wouldn't feel well with a TSH that high (various studies show that healthy people tend to have a TSH of 1 or less) and with a T4 that low (that's below the lab range and many women seem to feel best with a T4 of around 15.

Many people also need to have a higher ferritin level to feel well, especially since there is a clear relationship between iron and thyroid: http://www.ncbi.nlm.nih.gov/pubmed/1651678. Thyroid patients generally try to get their ferritin up to at least 70.

Amazingfun

Galbin wrote: »

Most people wouldn't feel well with a TSH that high (various studies show that healthy people tend to have a TSH of 1 or less) and with a T4 that low (that's below the lab range and many women seem to feel best with a T4 of at least 15.

Many people also need to have a higher ferritin level to feel well, especially since there is a clear relationship between iron and thyroid: http://www.ncbi.nlm.nih.gov/pubmed/1651678. Thyroid patients generally try to get their ferritin up to at least 70.

Thanks for the feedback.

Yeah I haven't actually been feeling great for the last two years, but put it down to my 'being in a rut' of sorts; just thought I was being lazy, getting older, etc. The only reason any of this came to light was I recently had a bit of a fright-I was sick in public (out-of-nowhere- vomiting) and had a weird experience along with it where my arms lost all power. It was so bad a total stranger called an ambulance for me as we both thought I was having a heart attack! Nothing like that has ever happened to me before or since, but it was scary, so I did go to the doctor.
I asked her if she thought perhaps this low thyroid thing could have anything to do with this episode, but she doesn't. She is sending me for a neuro-scan somewhere for that--but I think it may have been some kind of stress thing.
Anyways, she seems to think this hormone replacement drug is BRILLIANT, lol...and she told me I was unusual in that I didn't seem delighted to be starting the drug, as most of her patients seem to be dying to get on it.
I have never taken a regular med before, so that's why I was hesitant.
I hope my experience with it will be as good as she seems to think it will be, haha : )

Galbin

Amazingfun wrote: »

Thanks for the feedback.

Yeah I haven't actually been feeling great for the last two years, but put it down to my 'being in a rut' of sorts; just thought I was being lazy, getting older, etc. The only reason any of this came to light was I recently had a bit of a fright-I was sick in public (out-of-nowhere- vomiting) and had a weird experience along with it where my arms lost all power. It was so bad a total stranger called an ambulance for me as we both thought I was having a heart attack! Nothing like that has ever happened to me before or since, but it was scary, so I did go to the doctor.
I asked her if she thought perhaps this low thyroid thing could have anything to do with this episode, but she doesn't. She is sending me for a neuro-scan somewhere for that--but I think it may have been some kind of stress thing.
Anyways, she seems to think this hormone replacement drug is BRILLIANT, lol...and she told me I was unusual in that I didn't seem delighted to be starting the drug, as most of her patients seem to be dying to get on it.
I have never taken a regular med before, so that's why I was hesitant.
I hope my experience with it will be as good as she seems to think it will be, haha : )

That doesn't sound like a fun experience!! There is a major interaction between the adrenal glands /low iron and the thyroid gland. So that episode could very well have been caused by either of those factors. In my humble opinion of course...........

She is right that you will feel like a new person on the right hormone replacement. However, for many people that involves combination therapy. Few ppl regain their full health on Levothyroxine only, which is probably one of the main reasons why people here are not fully well. *

If you don't feel right on your meds, have a think about looking into the other factors mentioned on the stopthethyroidmadnes.com site. I myself would be chugging the Floridax with an iron that low. I had dreadful palpitations when my iron was low like that.

*There are other factors of course – low iron, low adrenal function including HPA axis difficulties, low B12, sex hormone issues and even Lyme disease.

Corruptedmorals

Boots do very cheap own-brand iron pills. 30 is the 'low' side of normal, but it's within range. It's recommended to be better than that of course. Mine is around 20, I can never get it higher than 50 but it's not an issue for me.

Edit: Don't forget you can't take iron with eltroxin. At least 6 hours between the two.

Sunny76

Hi there,
I am hoping for some advice in relation to thyroid medication. I got blood results back which show my TSH levels are high. Still waiting on anti-bodies results. I was borderline hypothyroid a few years back and was on Eltroxin for a few months but doctor took me off it again. Doctor has suggested going back on a low dose of Eltroxin but I would like to know if anyone has had any problems with hair loss on this medication as this is one of my main problems at the moment and is one of the reasons I went to the doctor in the first place. I also have very low ferritin levels which I have started taking iron supplements for. I am really worried that the medication may actually make my hair worse than it already is. I would be so grateful if anyone could share their experiences with me on this. I would also be grateful for any advice on supplements, food, diet etc that I should be working on. All this is new to me again and I am trying to get as much info myself on things and everyone on here seems to have a wealth of knowledge so hoping someone can help. Thanks in advance

cltt97

My hair used to fall out quite a bit due to the thyroid, but taking medication has always improved this for me. So chances are that taking thyroid meds will improve the situation, it might take a while though, all these "energy saving measures" of the body recover slowly and hair in my experience is relatively low on the body's list of priorities, so just hang in there.
Diet - a lot of people with Hashimotos do better on a low carb and/or gluten-free diet, some go dairy free as well. Personally I'm best on low carb, I got myself tested for coeliac disease which came back negative, but I get very bloated on rice for example, so for me it's carbs in general, not just the ones that have gluten. But everyone is different. Make sure you have a balanced diet, avoid refined and processed stuff and have lots of things that are naturally green, orange or red.
Vitamins - most of us here have low iron, low Vitamin D, low B12 and low folic acid. I've been tested for all these and they are all at the lower end of normal, Vit D is even insufficient for me.
Have you been tested for anything other than thyroid function?
Also be careful with low iron - this can cause a lot of problems when you start thyroid hormones, so you must try and increase this. Iron absorption is increased in the presence of Vitamin C, so green peppers or orange juice or another good source of Vitamin C is recommended.
And don't worry about the hair, it will re-grow. I remember the amount of hair in the shower-tray and not being able to run through my hair without picking up some on the way - freaked me out, too, but it'll pass.